This past weekend the six members of the Lupus Europe Board of Trustees plus Alan Cornet, Amy Somers and Zoe Karakikla-Mitsakou were supposed to meet face-to-face in Leuven, Belgium, but for reasons you can understand, this was not possible.

Thanks to understanding partners, children, roommates and dogs, we were able to have two full days of Zoom meetings.

During these two days, we: discussed the Lupus Europe Convention (you’ll hear more about that very soon): reviewed our (52!) Strategic Plan items: went over and updated our ideas and projects for Communications; made so many plans for meetings and calls regarding research, upcoming scientific events, the PAN and our sponsors; and shared any news that we have had from all of our members.

You probably recognize all the faces except one: Zoe Karakikla-Mitsakou. Zoe, (a Greek woman, living in England, who has a degree in psychology but also first-hand experience with lupus) has accepted to join Lupus Europe as a project manager. This was her first real work meeting with us, and we are so excited to be working with her!

The board members are still connecting with the country members to check up on how everyone is doing in these COVID times. So, don’t be surprised if you get an email from one of use asking to chat. We appreciated getting a live update on what is happening with Lupus Poland from Klaudia Kępa during our meeting.

This year Kirsi will be stepping down as Lupus Europe Trustee (but we are counting on her to remain involved with Lupus Europe as an experienced PAN member – we’re not letting her go just yet!). However, this means we are looking for members who are interested in taking their lupus work to a more international level: either as a trustee, or perhaps easier to start off, as a co-opt.
Contact any of the board members to ask about what either of those positions involve, and definitely ask what it’s like to work with all of us, it’s a good group!

Save the date! October 5th at 20:00 to 21:00 Paris time.

The Lupus Europe board will hold a webinar to update you on all these items. We look forward to seeing you all online!
Lupus Europe Board of Trustees

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🇸🇪 Spotlight on Lupus Sweden!

💜 At our #LupusConvention, Riksföreningen för SLE (Lupus Sweden) shared their inspiring work to raise awareness, spread knowledge and build connections across the lupus community in Sweden.

💬 Formed in 2017 as part of the Swedish Rheumatism Organisation, they now count almost 160 members. Their mission: to spread knowledge about lupus and counteract loneliness.

📘 One of their most beautiful achievements in 2024 has been the release of a children’s book, “My mother can have a butterfly on the nose”, written to help younger children understand what it’s like to live with a parent who has lupus.

🌸 Every May, they celebrate World Lupus Day with a national theme day, a tradition started in 2013! Each year, the event takes place in a different city so that all members across Sweden can feel included and represented.

🦋 Recently, they also launched a new lupus/SLE awareness pin, raising funds for lupus research and making lupus more visible to the public.

👏 Thank you, Lupus Sweden, for your dedication, creativity and compassion. A great example of how patient organisations bring people together and make lupus visible!
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📢 Calling all #lupus patients!

🦋 Lupus is a rare autoimmune disease that can potentially impact every aspect of life. From daily activities and social interactions to work and access to support, living with #SLE presents unique challenges that need to be addressed.

✍️ That is why we invite you to participate in the #RareBarometer survey by EURORDIS-Rare Diseases Europe.

Your insights can make a difference and help shape future policies that support people living with this condition.

🙏 Thanks for sharing your experience!

www.sphinxonline.com/surveyserver/s/EURORDIS75/MH_interface/questionnaire.htm
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📢 Calling all #lu

📣 LupusGPT was featured at the European Patients’ Forum (EPF) Congress in Brussels!

The EPF Congress is the largest European event dedicated to strengthening patient involvement in healthcare systems, policy and research. It brings together leading voices from the European patient community and cross-sector experts to build more resilient, inclusive and patient-centric healthcare across Europe.

💜 This year, our #LupusGPT poster was present thanks to the work of our Chair, Jeanette Andersen, and the support of Cathrine Hjelmeset from Lupus Norway and the Lupus Europe PAN, who represented us in Brussels. We are deeply grateful for their commitment.

🙏 We would also like to express our sincere gratitude to the EPF team for their remarkable support throughout the process. Their dedication ensured that LupusGPT was fully represented at the Congress, and we truly appreciate their efforts.

🧡 LupusGPT is built by patients to provide clear, accessible and reliable information, collaboratively validated by doctors and patients, about lupus in almost any language.

Try it now: lupusgpt.org/
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🟣 Living with systemic #lupus erythematosus can be a daily challenge for over 200,000 people across Europe, many of whom live with physical disabilities.

In fact, our Living With Lupus 2020 survey reveals the profound impact #SLE can have:

🔹 57.9% of respondents said SLE negatively affected their careers.
🔹 Nearly 50% faced challenges in daily activities, from studying to family life.
🔹 Fatigue remains the most reported symptom, affecting 85.3% of patients.

🦋 These figures highlight the need for greater awareness, inclusivity, and tailored support for those living with disabilities or chronic conditions like lupus.

🔊 On this International Day of Persons with Disabilities, let’s raise awareness to build a society where barriers are reduced and opportunities are accessible for all.

#WorldDisabilityDay
#IDPWD
#InternationalDayOfPersonsWithDisabilities
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LUPUS EUROPE Uniting people with Lupus throughout Europe
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